Monday, March 4, 2013

Has your doctor heard about these 'F-words?'

By Diane Kay

About a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy.

My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn't functional, we’re told, but his slow and excited steps give him a hard-to-beat feeling of independence that he may not experience when he's older.

Our government-funded physios say walking is bad for Alfie's hips because his tight muscles pull him into an unusual gait. They say Alfie should spend most of his time in a seating system or wheelchair or use a standing frame (which Alfie hates). On the other hand, private physios say Alfie should have a walker because he can take steps and enjoys it.

In trying to decide whether we should encourage Alfie to walk, Peter suggested I read a paper he and a colleague had written called The F-words in childhood disability: I swear this is how we should think!

The F-words are function, fun, friends, family, fitness and future. The words are based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which is a way of thinking about health that applies to everyone, not just those with disabilities.

The ICF framework is a diagram that shows how body structure and function, activity, participation, environmental factors and personal factors are interrelated and influence a person's health. No one factor is more important than another.

Peter and Dr. Jan Willem Gorter took these concepts and translated them into the simpler, family-friendly F-words, which they argue are also connected. These words convey what’s important to children with disabilities and their families in a way that I could relate to.

For example, if a family is having emotional or financial problems, this can impact on a child’s ability to function and have fun.

If a child isn’t able to get a key piece of technology, it has ripple effects on what a child can do.

And sometimes fun is just as important a reason for doing things as function. It was this description in Peter's paper about the word function that gave us confidence to support Alfie’s walking, even if it isn't the most efficient way for him to get around:

“We used to believe that from a very young age children's everyday activities… had to be done ‘normally,’” write the authors. “We have likely inhibited children's development by stopping them doing things considered to be outside the normal—literally ‘abnormally.’ One need only think of preventing children with cerebral palsy from pulling to stand and walking in a crouched gait or expecting children to communicate only with spoken language… Performance improves with practice, and hence our primary emphasis in counselling and intervention should be on promoting activity.”

And in writing about the importance of fun, the paper says: “…do not worry about expecting children to do things ‘normally.’”

It notes that youth with disabilities participate less in sports, hobbies or even hanging out at the mall than their peers. The simple answer is to ask children what they want to do… “It is the doing, rather than the superior level of accomplishment, that is most meaningful to most children,” they write.

We had always erred on the side of “if Alfie enjoys it, then why not?”

But reading these words in black and white in a research paper made us realize that it might be better for Alfie all round if he does do things—in whatever way he can.

I wonder whether professionals consider the effect that function has on having fun and participating and making friends? Or the way having fun can help build abilities?

The F-words, and how they’re interconnected, make sense to me, but I haven't seen the ideas applied by professionals with Alfie as much as I would have liked.

In thinking about my role negotiating with service providers, I decided to create an “F-words agreement” that we would share with professionals. This laminated print-out would be Alfie's document: he owned it, and he would show it at clinic visits as a starting point for discussion. To me it represents an informal but serious pact between the child and whoever they rely on for support. I see the F-words as a minimum standard, especially when decisions about services and interventions are made.

For example, under Function in Alfie's agreement it says: “I want to do stuff. It may not matter if I don't do it like everyone else.”

Under Family it says: “They know me best and I trust them to do what’s best for me. Listen to them. Talk to them. Hear them. Respect them.”

And under Future: “Tomorrow is what I make of today. I don’t want opportunities to pass me by. Help me achieve what I can today.”

We used the agreement for the first time when Alfie needed surgery to reduce his spasticity.

During a pre-op physio assessment, we shared why we thought it was important for Alfie to regain his pre-surgery skills.

“But Alfie won't be able to keep up with the other children on the playground if he's walking,” one of the therapists said.

I said we thought it was also up to other children to adapt their games to include Alfie.

We showed them the agreement, but to our surprise, the therapists didn't respond. There was a loud silence.

More recently I wrote to Alfie’s multidisciplinary team to ask for their specific feedback on the agreement, but I haven't heard anything.

Being cynical, I wonder if there’s a reluctance to implement these ideas because it would commit service providers and funders to doing more?

I hope other parents will create an F-words agreement with their child—one that could evolve with a child's development and interests. My initial idea was that you could issue it to your child like a passport in a plastic wallet or holder or on a keychain.

The message behind the F-words is that children with disabilities have a right to a future. The future may be tomorrow, but what determines its quality is what our children do today. Now when we're told something Alfie wants to do “isn't functional,” I'm confident in my reasons for saying “Sod functional, it's fun!” And I have the evidence in the ICF to back it up.

Diane Kay lives with her husband and two boys in North West England. She’s a volunteer for a charity that provides advice on special education and disability discrimination. Diane co-presented a workshop called “The F-words in childhood disability: Why is it so hard to do in the real world?” in Pisa, Italy. Her son Alfie goes to the same mainstream school as his brother Laurie, 5, with one-to one support. In addition to walking, Alfie loves swimming, music and going up and down in elevators. Watch a video of Peter explaining the F-word concepts.


I just read the F-word piece and LOVED it! My daughter adores moving and uses a walker at school and a hopsadress at home. The physios are so negative about it because she's not "fully weight-bearing" and prefer her to be in a stander, which she doesn't enjoy as much because she can't move.

I had a big fight with PT last year about her IEP because they wouldn't include daily walker activity because they don't consider it therapy. I went so far as to have one of her doctors write a letter to the therapist stressing the importance but it fell on deaf ears. It doesn't matter to them that it's one of the only activities she LOVES to do and gets such a feeling of independence and freedom.

Medical professionals need to learn a bit about what's good for the whole person, not just looking through the lens of their specialty.

Love this paper, but more than that me and my family love Dr.Gorter. We are fortunate that he is our son's doctor. He is applying F-words in every move that he makes, and teaching and showing people how to do it. We need to spread the word about it because it is essential for our children treatments - medical, social, educational... We experienced opposite many times, and we tried to show the world a big picture of our son's needs. Personal passports are good idea but teaching people how to approach to a special needs child/family should be a goal.


Thanks for your comments. I'm sorry you (first comment) have experienced similar experiences to me, but I'm really pleased that you can identify where things could improve. Hopefully you will be able to use the 'F-Words' and the ICF to add a bit of 'oomph' when explaining why it is so important for your daughter to walk.
I met Dr Gorter in October last year and he really is a breath of fresh air in his attitude towards the whole package of disability. I agree with you when you say people's approach to a child/family with disability needs to be positive for anything else that follows to have any impact. I think more should be taught at school about disability (and every other topic relating to diversity and equality). That wouldn't help us right now, but it would strengthen the foundations for future improvements in attitude and knowledge. Viva La F-Words!!

I love hearing parents pushing physical therapists to do more! I find it frustrating working with PTs who don't think outside the box.

I find it's all about quality of life - balancing quality of life today against quality of life in the future.

My daughter loves to kneel. But one leg is shorter than the other at the thigh, she has pins in one hip, and no sensation in her legs. So kneeling for too long today can lead to pressure sites, breaks, further surgeries, tomorrow. We let her kneel. But we do have to limit it.

She too would live to walk, even though it wouldn't be "functional." She can't; her legs don't respond enough, even with all the support we can give her. But we compromised by finding a standing frame on big wheels (Rabbit from R82), so she was not tied to one spot when standing. Putting the fun back into functional.

Similarly, she's entitled to a posturally supportive seat at school. Ordinarily around here, that means some kind of static seat with a high/low function to enable a child with physical disabilities to fit under a regular school table, come up high for standing work, and get down to more or less carpet level with their peers, all whilst strapped in with feet , legs and hips at those magic 90degree angles.

Instead, we went for a lightweight, indoor, self propelling wheelchair (bravo racer). She travels to school in her power chair, then transfers into this zippy lightweight chair where she is instantly as moveable as her peers.

The F-Words is a new learning to me.We have a daughter (20 yrs) and a son (12 yrs) with walking disability only.My daughter is sitting for O level examinations and son is in 5th grade(9 yrs of schooling) in main stream English medium school.We(parents & child) are not so lucky like parents & children of America,Canad or Australia.My son is the only student in the school(ist student in 45 yrs of the school) and my daughter was also like that.We have not seen any family any where in America,Canada,Europe,Singapore with 2 wheel chairs.In Bangladesh there is no facility (in any form) to live alone with disability.We do not know what will happen.We are not able to move to Canada or America or we do not qualify for migration.May Allah look after our children and all children.

Thanks Tia and Musa48 for your comments :)

Tia, totally understand where you are coming from about limiting activities that will cause harm and I think a little bit of what you like is fine and it's about using common sense to weigh up the pros and cons.

I presume you self-funded the R82 Rabbit and Bravo Racer? We absolutely hated the static standing frame that Alfie was expected to stand in 'for a minimum of an hour a day', and he wasn't keen either initially. He tolerated it until he began using a self propelling wheelchair, and then we felt we had no choice but to get him an R82 Rabbit. We had it part funded by the charity Newlife. The irony in this case I feel, is that the clinicians said Alfie's walking wasn't functional, yet they thought it was acceptable for a child who could mobilise independently in a wheelchair (very functional), to stand, totally immobilised, in a static standing frame, totally dependent on others. For a time, Alfie enjoyed his Rabbit stander, but the feeling of having his hips, legs and feet strapped in is too much for him. For a child who can use their legs, albeit in a unique way, I think it is cruel to expect them to be fixed in one position. It reminds me of old fashioned punishment of being made to stand in a corner. No child would be expected to do this any more so why should Alfie? I'm not saying I think standing frames are not useful, but for children who can move around, an alternative should be offered. At the moment, it takes a lot of persuasion, and infinitely exciting activities facilitated by others to help Alfie stay in it for any length of time.

I think that although there are alternatives available to help children with disabilities be more independent and to participate, they are the often the privilage of families who can self fund, or obtain charity support. However, when thinking about the components of the ICF (and more easily the F-Words), there is clearly a large gap separating what the WHO says should define health for children with disabilities(and in fact everyone) and what is actually provided to ensure these children enjoy the same quality of life as their non-disabled peers.

Musa48, I am in the UK and I would like to reassure you that my son wouldn't be provided with 2 wheelchairs either!! I am guessing that Tia's daughter had her 2nd wheelchair provided privately.

My son goes to a mainstream school too, and although it isn't a common thing for a pupil with his level of needs to attend a mainstream school in my town, it is the right place for him. It has been a steep learning curve for everyone involved, but the benefits outweigh the hard work.

All the best, take care, and thanks again for your comments.

Hello Diane kay.Thanks for your posting.I think I could not explain about 2 wheel chairs properly.My son does not use wheel chair at home and at school.But when we go abroad(only occasion to go out other than school)at airport,hospital and shopping my son uses wheel chair.So at that time my son and my daughter are on wheel chairs.Me and my wife push 2 wheel chairs, which we enjoy very very much.

Hello Diane,
I read with much interest your post and was wondering whether your son participating in a conductive education setting in the past or currently.

Hi Rony

Yes my son has enjoyed conductive education in the past. From age 2 to 5 he attended a CE centre once a week, and I feel he really benefited from it. When he started school he carried on for the first year but then it became too much to juggle, so he stopped.
I like the way conductive education deals with the whole child, and focuses on doing activities that help in real life. It was also great fun, and my son's Conductor was fabulous. She was Hungarian and had such a great way with Alfie. He still sings the songs he learned there now!

Best wishes

Hi Dianne

Thanks for your blogg. I found it interesting provoking if a little saddening.

I love the F words too and I am a nhs uk PT! I am doing all I can to raise the profile of the ICF.